The Thunder of Engines
Page 23
But that she wanted to.
Kaem held out a hand to her, “You always told me, Mama, that someday, somebody would believe in me the way you do.”
Her eyes softened and she stepped closer. Kaem gathered her in a hug.
Bana had her hands on her hips. “That’s an unbelievable load of crap! What’s really going on?”
Kaem looked his sister in the eyes, the eyes that had always seen through him in the past and held out his phone. He said, “Here’s your phone. The company’s getting me a new one.”
Bana’s eyes stayed doubtfully on his for another moment, then were drawn magnetically down to the phone. “Really?”
“Uh-huh,” Kaem said, “Though, I’ve still gotta use this one until I get the new one from the company, okay?” Then his eyes went to his dad who’d just come out of the back room. Emmanuel had on a knit shirt. The shirt was snug enough that Kaem could see that, instead of the trim, muscular father he’d always been, his arms looked wasted and his belly distended.
Cheeks hollow, the bones of his face prominent, neck scrawny, his dad looked… sick. Then Emmanuel smiled, “Kaem! What are you doing here?”
“I came to get you, Dad,” Kaem said, heart catching in his throat as he walked over to hug his father.
His father’s big belly and gaunt arms felt… disturbing.
~~~
During the drive back to Charlottesville, Kaem refined his lie, keeping to the truth whenever possible and feeding the lie to them in dribbles and pieces:
Staze had been founded by a reclusive billionaire who worked completely behind the scenes. No one knew who he was. He communicated entirely by phone and text, often telling Kaem what to do by speaking in his earphones.
Mr. X had based the invention of stade on his own development of ideas he’d gotten after hearing Kaem’s bizarre theory of time—the same theory Kaem had told his family about before he left for college, so they were familiar with its existence, though extremely dubious of its veracity or value.
Mr. X had, in fact, done something completely different from the forward time-travel Kaem had envisioned with his theory. Nonetheless, X valued the insight Kaem’s theory had given him. Enough so that he’d taken the patent in Kaem’s name—though this was to a large degree because he didn’t want his name in the public eye. He’d also given Kaem a small interest in the company.
Kaem’s job at the company was mostly a make-work gift. He supposedly worked part-time as a “technical adviser.” A job that didn’t really have any responsibilities. Kaem hoped that, after he graduated, he might be able to contribute something useful, but he was worried about whether he’d succeed.
From the front seat, his dad said, “But Kaem! We want you to get your degree. You shouldn’t be worrying about me. I swear, I’m going to be fine. As I said, I’m already feeling much better and probably don’t need any more treatment.”
Sophia rolled her eyes, leaned forward, and opened her mouth. Kaem could tell she was about to start shouting at his dad—reminding him just how sick he was. Trying to beat down the walls of Emmanuel’s denial. Kaem put a hand on his mother’s arm while shaking his head, and mouthing the words, “Let me talk to him.”
She shook her head, rolled her eyes, and sank back in her seat, waving tiredly for Kaem to go ahead and talk to his dad.
Thinking it bizarre that his mother could both worry terribly about Emmanuel’s health, yet be ready to rip his head off for denying his illness, Kaem got out the grade printout he’d brought with him and passed it forward to his dad.
“What’s this?” the older man asked.
“You keep worrying about me failing out of school if I do anything but study. I just wanted you to see my grades. I’m hoping they’ll help you stop worrying.”
“Ah,” his father said, his eyes going back down to the transcript. After several minutes, he said, “I’m not sure I understand. What’s a good grade in these classes?”
“An A.”
“I don’t see anything but A’s?”
“Exactly.”
“But… surely…” his father began.
“Yes… surely,” Kaem said lovingly, but also just a little impatiently. “Despite all your fears, your son is getting good grades.”
“Let me see!” Sophia said demandingly, stretching her hand out over the seat in front of her.
His dad let the papers slip from his hands into his wife’s, then turned watery eyes on Kaem. “That’s very good, my son. Now, if this really is cancer, I can die with a light heart.”
Kaem found his own eyes flooded. He choked out, “We’re going to beat that cancer so you can stay around to see your grandchildren.”
“You’re getting married?!”
“No, no!” Kaem said, hands up in surrender. “Bana might be, but I have no plans. I’m just trying to say you’re going to be alive for a long time yet!” Kaem felt Bana’s eyes on him and looked over at her. She was staring. “What?”
“You’ve got to be cheating. No way my dumb brother’s getting good grades in college.”
Emmanuel exclaimed, “Bana!”
“I love you too Bana,” Kaem said, a gentle smile on his face.
~~~
Pulling up to the hotel he’d reserved for them caused a good deal of consternation as well. The hotel wasn’t particularly expensive, but they’d thought he had a friend they’d be staying with. “I can’t put three of you up with a friend!”
“We can sleep on the sofa or on the floor!”
“I don’t have any friends I can ask to take you!” he said, wondering briefly whether Gunnar would be willing to take them, ridiculous as that would be.
“We could sleep on the floor in your dorm room.”
“No! My roommate and I don’t get along. He’d report it as soon as you sat down.”
Kaem’s mother looked appalled, “Why don’t you get along with your roommate??”
“Because he’s a jerk. Remember that seven thousand dollars? He’s the one that stole stuff from me.”
She drew back, “He isn’t in jail?”
“No Mama,” Kaem said, opening the Uber’s trunk and getting one of their bags.
Bana got the biggest bag and Sophia took her own. Emmanuel tried to take the big one from Bana, but she pulled it away from him, “You’re sick, Dad,” she said. “You’ve got to let us help you.”
Kaem checked them in while trying to convince them that Mr. X was having the company pay for the room—true enough in a way, since Kaem was Mr. X and was the majority owner of Staze—then when he had to sign, managed to restrain himself from recoiling at the price through force of will. I can afford it now! he reminded himself. Then he realized he should get them a two-room suite. That’d mean he had to pay even more. His long-standing frugality had him wondering whether he should tell Bana she was sleeping on the floor in the first room. Or, he thought, looking at the options, I could get this single room with two queen-sized beds they could share. He shook his head, I have the money and I’m damned well going to spend some of it!
He took them out to dinner, which brought another flurry of protests. His mother had packed food in her suitcase and couldn’t conceive of going to a restaurant when they had a long line of impending financial problems.
Leaving them in their room at the end of the evening, he felt exhausted, mostly from all the effort it’d taken to convince his parents to let him take care of them. He promised to pick them up at 12:30 the next day to take them to the doctor.
At least they hadn’t argued about that. Charlottesville wasn’t a big city, but it was big and frightening to them.
***
Dr. Starbach proved friendly and likable. He showed Kaem’s dad pictures of the cancer cells in his marrow and compared them to images of what normal cells should look like. Though they wouldn’t have recognized the lymphoma cells, the fact that they were different from normal cells was obvious even to laymen. Starbach explained where Emmanuel’s symptoms came from and—withou
t prompting from Kaem—how the meds he was on at present suppressed the symptoms but did nothing to stop the grinding progress of the cancer.
“So,” Starbach said, “unfortunately, chemotherapy involves taking one or more poisons that kill cells. Though they’re more toxic to cancer cells than to your normal cells, they are still going to kill some of your normal cells and that’s going to make you sick. It wouldn’t be so bad, except the medicines also aren’t quite toxic enough to kill all your cancer cells. Then the cancer cells that survive will have been, in a sense chosen because they were the ones that could tolerate the chemo drugs. Thus, the surviving cells can be said to have evolved into a form of cancer that’s resistant to chemo because a kind of survival of the fittest has selected only those cancer cells that are resistant.” Starbach looked hard into Emmanuel’s eyes, “Do you understand what I mean by that?”
Kaem’s dad nodded. Kaem thought his dad understood the concepts since they’d talked about evolution when he was younger.
Starbach continued, “Chemo treatments will kill lots of your cancer cells at first. It’ll make you sick each time but it’ll be worth it because it’ll set the cancer back a lot. But, usually, the cancer will come back from the evolved cells that survived. We’ll do more rounds of chemo, but they’ll be less effective because the remaining cancer cells will be better able to tolerate the drugs we’ve been using.”
The doctor paused and Kaem’s dad nodded his understanding.
“Then our choices will be to use higher doses of the chemo drugs we’ve been using, which will kill more of your normal cells and thus make you sicker yet, but will kill more cancer cells. Or, we’ll try different chemo drugs that your cancer hasn’t evolved to tolerate.” Starbach looked at Kaem’s dad.
Emmanuel nodded.
“Sometimes we try both things at once. Often, in hopes of preventing these problems, we start with more than one chemo drug because it’s harder for the cancer to evolve to resist two drugs at the same time than it is to evolve to resist only one, can you see how that might be?”
Emmanuel nodded again. He said, “Like if moths are suddenly more likely to survive if their color is darker and if they’re bigger. The chance of a moth in the next generation having both of those characteristics is much smaller than the chances it’ll have one or the other.”
Starbach nodded with the kind of smile you might give a particularly bright pupil. “So, chemo will make you sick, but barring particularly bad reactions it’ll likely keep you alive longer. It isn’t likely it’ll cure you, though that does happen sometimes. Understand?”
Kaem’s dad nodded, but then gave denial of his illness one more shot. “But I’ve been taking both the meds my doctor prescribed and some traditional African remedies. I’ve been feeling a lot better. What if I’m already beating it?”
Though Kaem thought it must frustrate Starbach to get such questions, the doctor simply nodded as if it were the most normal thing in the world. “It’s natural to wonder. Here’s what I can tell you. As I said, the medications your doctor put you on aren’t intended to do anything to stop the cancer. It’d be extremely unlikely that they’d accidentally do something to cure a cancer. They are intended to make you feel better though, so that could easily explain how you’re feeling.” Starbach waited for Emmanuel to nod, then continued, “Natural remedies have been found helpful for some cancers, but none have worked in lymphoma so far.” He shrugged, “Of course, your treatment could be an exception to that rule, but there aren’t any good ways to find out.”
“Is there any way check?” Emmanuel asked, leaning forward eagerly.
“Well, unfortunately, there aren’t any simple, reliable lab tests. Repeating your bone marrow biopsy—the mention of this brought a shudder to Kaem’s dad—wouldn’t help because we might biopsy a different area where there were more or fewer cancer cells to begin with. Thus, it wouldn’t tell us whether all of your marrow had more or less cancer. We could do another CT scan and compare it to the last one, trying to see whether your marrow looks better or worse, or whether there are more swollen lymph nodes inside your body. But doing another CT scan only a week or so after the last one,” he shook his head, “there wouldn’t have been enough time for the changes to be big enough to detect. We’d have to wait longer to let your cancer grow bigger so we could detect the change… which I wouldn’t advise. Finally, we could do a physical exam to see if your lymph nodes, like the ones making lumps in your right armpit, are more or less swollen. You may be a better judge of that than I am, since I’ve never examined them before?”
Emmanuel’s face had fallen, “Those lumps… I think they’re bigger.” He frowned, “Couldn’t that just be my body fighting the cancer?”
Starbach slowly shook his head.
Sophia opened her mouth to interject, but Kaem laid a hand on her arm and she subsided.
Emmanuel said, “Okay. I guess I need treatment. But are you saying I’ll have to have chemo? I thought you were some kind of cart cell therapist?”
It took Kaem a moment to realize that his dad was pronouncing the CAR T-cell therapy “cart.” Kaem felt embarrassed, but the malapropism didn’t faze Starbach who’d probably heard it before.
Starbach gently explained, “I would suggest CAR T-cell therapy for you. The C-A-R stands for Chimeric Antigen Receptor. What happens is we’d harvest some cells from your immune system called ‘T-cells.’ We’d take them from your blood and send them to a lab where they’d be genetically modified to help them attach to your cancer cells. Then, one to four weeks later, you’d come back in and we’d give those T-cells back to you, all primed to find cancer cells. They’re a little bit like heat-seeking missiles. Instead of seeking heat, they’re looking for proteins that are on the surface of your cancer cells but not on your normal cells. They glom onto those proteins, then do their normal duty, which is to kill the cell they attach to. They kill cancer cells without killing any of your normal cells at all. It’s like chemo, but much more specific, can you follow how that would work?”
Emmanuel nodded, “So it can’t make you sick?”
“Well,” Starbach said, “there’s a saying in medicine that there’s no treatment so benign it can’t make you worse. This one’s no exception. The biggest problem is a tendency to kill so much cancer so fast that the reaction of the immune system itself makes you sick. That used to be a big problem, but now we know more about how many T-cells to give you and we have ways of suppressing those overly-exuberant immune reactions. Nonetheless, it can still be a problem. We’d need to keep a close eye on you for a few days after you get the T-cells put back in your system.”
Kaem’s dad took a moment to digest this, then said, “Okay, I’d like to do it. How much does it cost?”
Apprehensive of his dad’s reaction, Kaem said, “Don’t worry about it Dad. Like I said, the company’s going to pay for it.”
“I still want to know how much it is. I’ll pay as much of it as I can.”
Starbach glanced back and forth from Emmanuel to Kaem, then back to Emmanuel, “I understand you’re not insured?”
“No, I’m going to pay it myself.”
Hesitantly, Starbach said, “With you being from out of state and without insurance, you’d have to prepay before your cells could be sent away to the lab to be modified.”
Kaem said, “I’m authorized to prepay with the company’s funds.”
At the same time, his dad said, “We can prepay. How much is it?”
Kaem said, “Don’t worry about it. Staze said they’d pay for it.”
“No. I don’t take charity,” his dad said with a firm set to his mouth, “How much does it cost?”
Kaem had opened his mouth to try once again to deflect his dad, but Starbach said, “The price has come down, but it’s still two hundred and fifty thousand.”
Kaem had been expecting something more in the range of three hundred thousand so he felt relieved.
His dad, on the other hand, simply stared. “
Dollars?” he asked, as if there could’ve been some other unit that might’ve been in play.
Starbach slowly nodded, “It’s… unbelievably expensive. And, sorry to say, that’s if everything goes right. There’ll be even more costs if something goes wrong and you have to come into the hospital. I should point out that regular chemotherapy costs about half as much, though it rarely cures a patient. CAR T-cell therapy cures sixty to seventy percent of the patients who get it.”
Trying not to look at his family, Kaem stood. “Where do I go to transfer the money?”
Sympathetically, Starbach said, “You’re sure you want to do this? I’m sure you could get chemo much more cheaply back in West Virginia. It’d probably be covered by Medicaid and would make you better for quite a while.”
“We want CAR T-cell therapy,” Kaem said, moving toward the door and trying to will Starbach to leave the room with him. We have to get out of here before my dad decides his life isn’t worth it! Kaem opened the door a little and repeated himself, “Where do I go to transfer the money?”
Starbach looked up at Kaem, then stood and turned toward the door.
Kaem spared a glance at his family. His parents looked thunderstruck. Bana was crying.
Kaem’s dad cleared his throat and Starbach turned back toward him. Emmanuel’s throat worked but he didn’t say anything.
Kaem pulled the door open further and motioned Starbach toward it. Starbach finally took the hint and stepped through. Kaem pulled the door closed as quickly as he could without, he hoped, making obvious his panicked fear that his dad would say “no.”
Out in the hall, Starbach immediately tried to talk to Kaem, but acquiesced to moving farther down the hall when Kaem—fearing his parents would be able to hear through the door—made such motions with his hand.
As they walked down the hall, Starbach gave Kaem a concerned look and said, “I know you’ve been saying that your company’s agreed to pay for your dad’s treatment.” He shrugged, “But the clinic’s financial adviser tells me the visit today was billed against your personal checking account.”